I have just been told that a distant cousin may have Acardi-Goutieres syndrome. This site has pointed me in the right direction, thank you. Sarah at Mens Engagement Rings

Hi All, I was hoping to touch base with anyone who may have ideas on teaching yes/no to a 4 year old with AGS2. Also helpful would be any tips on teaching to blink on command and in response to questions. Any other communication techniques are greatly appreciated. Thanks, Gillian

My daughter Kirsten turned 19 on the 7th August. She had bi-femoral osteotomies when she was 7 it was successful but very painful. You need to make sure you have a good surgeon who will provide suitable post-op pain relief. Kirsten needed valium because she was spasming inside the plaster which caused an ulcer on her heal.

Tucker is 5 yrs. old and has been diagnosed with AGS. He is 23 lbs. and eating soley by mouth. Although it take a lot of time it is something he enjoys doing. Recently his Orthopedic doctor is suggesting he have a femoral and pelvic Osteotomy done. This is a very invasive surgery and will put him through a lot of stress. I know Tucker will never walk or sit up so this surgery is strictly for pain management and for his ability to put weight on his legs in the stander, sit properly in wheelchair etc.. I do believe he has some pain, but not enough to be concerning right now. Have any of you had to make this choice to do or not to do major surgery??? Plese help I am very confused !

hi our daughter was born in november 2009 she was diagnosed in january 2010 with aicardi goutieres syndrome we are waiting to see geneticist.>> Can any one help with their experiences we feel so isolated and no one really understands not even the doctors really know anything about it. we have had a bad few weeks mollie asperated into her lungs which caused pneumonia and she ended up in intensive care on ventilator for 9 days - she is now on nasal oxygen and out of intensive care she has had an NJ tube fitted yesterday so we have to see how she gets on. THey thought she was having seizures/fits in the last few days they gave her an eeg but it showed that she did not have any seizure/fit which is good - can you help are these spasms she is having due to severe reflux or something else?? We live in England. Any advice would help us.

We stopped giving vaccines when Jack was 12 and Ben was 8, because we noticed that they would have a neurological reaction about 48 hours after the vaccine. This reaction became more severe and more noticeable as they got older. If you give a vaccine, watch them very carefully for sleepiness, irritability, or mild fever, especially 24 to 48 hours later. If this happens, then the vaccine is causing brain inflammation. Donna Miller

Dear Karol, we have not do the H1N1 vaccination on our son. But I know some families they have done the vaccination without any problems. Best wishes Mustafa

HI HERE IN BRAZIL HAPPENS VACCINE VIRUS H1N1. WANT TO KNOW IF MY CHILD WITH AGS 2 CAN TAKE THIS VACCINE. THANK KAROL, MOTHER OF PEDRO CORDEIRO

Olá me chamo Silvana e tenho uma filha com 01 ano e 09 meses com a Síndrome de Aicardi-Goutiéres, caso haja alguma novidade a cerca desta síndrome por favor envie e-mail pra silvana-cunha@ig.com.br, pois não tenho muitas respostas sobre ela e se há no Brasil alguma Assossiação que fale a respeito. Obrigada.

I found this site today (January ,2010). Sixteen years ago it did not exist, and the name Aicardi-Goutieres Syndrome was unknown to a lot of people, including doctors. I am a mother of a beautiful girl named Isabella, she will be 16 in April. I never got a formal diagnose for her, but most likely she has Aicardi-Goutieres Syndrome. If anybody wants to exchange mails, or exchange information, please write me! Claudia

am i able to give the story of my daughters problems with a-g s, or would it be considered too long as they covered 14 complaints. Chas

My 4 month old son was diagnosed with Acardi Goutieres Syndrome.I just found this site and would like to know what to expect and also any information regarding this syndrome.

i have just been told that my 2 month old baby girl has aicardi goutieres syndrome! can someone please tell me some information about how my childs life is going to be ?

I am an Occupational therapist, and I have recently started working with a child diagnosed with Aicardi Goutieres Syndrome. I found your website of so much benefit as I didn't have previous knowledge of the syndrome, thank you very much...

Hi Tim, Olivia had her 2nd H1N1 vaccination last week (children 9 and under need 2 shots 21-28 days apart)with no side effects or complications as well! The nurse told me that this vaccination will be included in the regular seasonal flu shot next year.Hope Sadie is doing well! ~Kim

Hey Kim, Sadie had the H1N1 vaccine last week with no complications. If you tickle her face while they're giving the shot, she didn't even notice because of her laughing. Hope it helps. Tim

hi there!! I have two children aged 10 and 3 with ags and have only just had diagnosis would love to hear from anyone with similar circumstances, tips, helpful nfo etc so feel free to contact me thanks :-) x

Great website design, including a very good content ! Congratulation Sylvain Vente vtt

Hi Kim, Olivia had the H1N1 Vaccine last week, with NO complications or side effects. Kim

Another note on immunizations. Dr. Lebon in Paris has tested many AGS patients who sent him blood and spinal fluid to test for interferon to see if the child had made antibodies to immunizations. He said that some AGS kids do form antibodies but some do not. You might ask your doctor to test your child's blood serum for antibodies to previous immunizations. If your child does not form antibodies, then there is no use in giving immunizations. Some AGS kids are partially immune deficient in missing IgA or IgM or IgG components of their immune system. Ask your doctor to test for this also.